Hey all! I posted for the first time a few days ago; since then, I’ve read some posts recommending books that sound really useful - especially Amadore “I am not sick I don’t need help.”
Any other book/talk recommendations that might be helpful?
I’m new to this world and way out of my depth!
Hi! I’ve seen Surviving schizophrenia mentioned on here a few times. Also The Quiet Room.
Thank you! I’ll check them out; I’m watching a talk by Xavier Amadore now and already getting so much out of it.
So grateful for the resources shared here! It’s amazing to realize just how wrong I’ve been throughout this process. It feels good to expand my understanding with resources coming from folks with lived experience; researching online is like looking for a needle in a haystack
I recommend ‘It’s Ok Not to Be Ok’ by Megan Devine. Caring for a child that has been diagnosed for SZ creates a profound sense of grief and loss. And NO ONE (friends, families, church, community, etc) knows what to ask or say. This book helps revise our perspective on grief and loss. It is not a 5-Step Process to ‘get thru’. Sometimes a loss is forever and it’s ok that you’re not feeling ok. Very helpful when caregivers experience the isolation and loss after receiving the diagnosis. (Our son’s diagnosis accompanied a major episodic event with grave self-harm, which also led to people not knowing what to ask/say.)
I’ll share a few talks/books from the diagnosed perspective. Bear in mind these tend to be higher functioning high achievers, as assembling and relating a coherent narrative is often difficult when diagnosed.
Elyn Saks is a law professor at USC who wrote a memoir, The Center Cannot Hold. There are various interviews and talks she gave to promote and follow up on the book, but the following Ted Talk is among her most accessible.
Eleanor Longden is a psychologist who wrote Learning From the Voices in my Head. I haven’t read it, but she is an eloquent speaker about her experiences.
While bearing little resemblance to the movie, A Beautiful Mind is a meticulously researched and documented biography of Nobel Prize winner John Nash by Sylvia Nasar. It’s a bit of a slog to get through, but it’s offers an unvarnished look at his life from various perspectives. The movie highly whitewashes and sentimentalizes events of his life, but is accessible on emotional levels in ways the book is not.
Thank you so much; it’s been a grieving process and advice on how to better navigate this emotionally is so welcome.
Thank you so much for this; I’ll watch them both as soon as finals are done!
In addition to these suggestions here, I would recommend “Hidden Valley Road” about the family who helped in the research to determine the genetic aspects of schizophrenia, “The Collected Schizophrenias” by Esme Weijun Weng, and “No One Cares About Crazy People” by Ron Powers, who has two sons with schizophrenia (one took his own life).
There’s some great free online classes/training for helping a loved one with schizophrenia done by universities:
http://depts.washington.edu/ebpa/what-we-do/family-caregivers/psychosis-reach/
Not a book/talk, but Living Well With Schizophrenia on YouTube is a fantastic resource. The woman who runs the channel has schizoaffective disorder, and she and her husband talk about managing schizophrenia, her experience with different meds, what it’s like as someone with schizophrenia raising kids, etc. She also made a handful of videos while in the psych work a few weeks ago.
A lot of media likes to focus on folks with schizophrenia when they’re at their worst/experiencing a psych break, but Lauren goes beyond that too! I think she has also uploaded a few of her discussions with a psychiatrist about treating schizophrenia and different medications’ side affects.
Being open to learn more is always going to serve you well. Best wishes!